Pediatric Pulmonology 49:938–940 (2014)

Letters to the Editor

Cystic Fibrosis Database (CFDB): A new web-based tool for cystic fibrosis specialists Roberto Buzzetti,

* Natalia Cirilli, BSc (Hons),2 Laura Minicucci, MD,3 Valeria Raia, Donatello Salvatore, MD,5 and Paolo Maffeis, MD6

MD,

1

MD,

4

Summary. In order to help specialists involved in CF care and clinical research to know the current best evidence about clinical effectiveness of interventions in CF, we designed and developed a web-based, free access tool called “CFDB”—Cystic Fibrosis DataBase (www. inetflow.it/CFDB). The database was built by searching in Medline, Embase, Cochrane Library and worldwide trials registries all studies involving clinical interventions in CF. The tool lets the user define queries starting from one or more types of pathological conditions and one or more interventions. The output of the queries is structured in three levels: (1) how many and which studies deal with the conditions formulated in the query; (2) which are the main results of these studies; (3) a critical summary of the literature related to the query. This tool, providing a quick overview of the available evidence in clinical research in CF, may help clinical decision making, designing of new trials and building guidelines. Pediatr Pulmonol. 2014; 49:938–940. ß 2014 Wiley Periodicals, Inc.

Key words: database; clinical trials; systematic reviews; cystic fibrosis. Funding source: Italian Cystic Fibrosis Foundation.

INTRODUCTION AND OBJECTIVES

Time limitation is one of the biggest obstacles to evidence-based practice but clinicians should seek evidence from as high in the appropriate hierarchy of evidence as possible. Moreover, clinicians need to be able to distinguish high from low quality in primary studies, systematic reviews, practice guidelines, and other integrative research focused on management recommendations.1 Therefore, physicians and other health care professionals, involved either in cystic fibrosis care or in cystic fibrosis research, would greatly benefit from a specific Information-Technology tool, especially designed to give them, in a short timeframe, the state of the art of a clinical topic. All health care professionals and researchers need to know what studies can give them the proper answer to their questions, no matter if the question is which antibiotic to use for Pseudomonas infection, if glutathione can be useful for CF patients or what kind of therapy is best for a patient. Sometimes they can find a clear answer (intervention works—or the intervention will not work). It often happens that they remain uncertain though, as the studies conducted so far do not give a clear ß 2014 Wiley Periodicals, Inc.

1

Italian CF Research Foundation, Verona, Italy.

2

CF Centre, United Hospitals, Ancona, Italy.

3

CF Centre, Gaslini Hospital, Genova, Italy.

4

CF Centre, Federico II University, Naples, Italy.

5

CF Centre, Centro Pediatrico Bambino Gesu` Basilicata, San Carlo Hospital, Potenza, Italy.

6

Inetflow Service SRL, Bergamo, Italy.

Conflict of interest: None. 

Correspondence to: Roberto Buzzetti, MD, Fondazione Ricerca Fibrosi Cistica, Ospedale Maggiore, P.le Stefani 1, 37126 Verona, Italy. E-mail [email protected] Revised 30 September 2013; Accepted 7 October 2013. DOI 10.1002/ppul.22954 Published online 16 February 2014 in Wiley Online Library (wileyonlinelibrary.com).

CFDB: A Web-Based Tool for CF

answer, and further studies would be necessary. Meanwhile, different entities have devoted themselves to developing Web tools for helping users quickly and efficiently search and retrieve relevant publications. These practices, have led to an increase in the number and quality of various Web tools that provide literature search service.2 The primary objective of this project was to help specialists involved in CF care and clinical research to know the current best evidence about clinical effectiveness of interventions in CF. We have designed and developed a web-based, free access tool called “CFDB”—Cystic Fibrosis DataBase (www.inetflow.it/ CFDB) that could satisfy the clinical questions for CF health care professionals. In this short communication we describe this tool.

METHODS Search of Studies

A project team of clinicians together with a leading expert in epidemiological and clinical research made a systematic search in Medline (http://www.ncbi.nlm.nih. gov/pubmed/), Embase (https://www.embase.com/), Cochrane Library (http://www.thecochranelibrary.com/) [Cochrane Database Of Systematic Reviews (CDRS); Database Of Abstracts Of Reviews Of Effects (DARE); Cochrane Controlled Trials Register (CCTR/CENTRAL); Health Technology Assessment Database (HTA); NHS Economic Evaluation Database (NHS EED)], and in worldwide trials registries (http://www. clinicaltrials.gov/, https://www.clinicaltrialsregister.eu, http://apps.who.int/trialsearch/) using “cystic fibrosis” as a keyword or a title word, with no limit of time or language. Selection of Studies

Two independent reviewers (R.B. and N.C.) assessed studies and trials for inclusion. The inclusion criteria were the following: primary studies (interventional or observational, ended or ongoing) and secondary studies (systematic reviews, health technology assessment reports) focusing on the effectiveness of interventions in CF. Ongoing studies from trials registries (only phase II, III RCTs, and phase IV studies) were also included. For the non-pharmacological interventions, also controlled and observational studies (cohort studies, case– control studies) were included; for pharmacological interventions and for ongoing trials only randomized controlled studies were selected. Studies with patients other than CF, or having only few CF patients, or without a control group, or focusing on

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“basic science,” etiology, epidemiology, prognosis, guidelines were excluded. Classification of Studies

Studies were classified according to an “ad hoc” dictionary of keywords. For systematic reviews the following variables were analyzed: code, reference (year, title, authors, journal, and registry), interventions,

TABLE 1— The List of Topics (Level 3) Abnormal glucose metabolism ABPA Active cycle of breathing technique Agents which reduce gastric acidity Antibiotic treatment of early Pseudomonas aeruginosa Antibiotics for pulmonary exacerbations Antioxidant supplementation Azithromycin Bisphosphonates Bronchodilators Calorie supplements CFTR correctors—Potentiators Chest physical therapy Chronic rhinosinusitis Dornase alpha Exercise and physical training Fibrosing colonopathy Fungi Gene therapy General nutrition recommendations Growth hormone Hemoptysis Hypertonic saline Inhaled antibiotics Inhaled corticosteroids Liver diseases Lung transplantation Mycobacteria MRSA Eradication Nasal polyposis Non-invasive ventilation Non steroid anti-inflammatory drugs O2 therapy Omega-3—zinc probiotics Oscillating devices Osteoarthritis Palivizumab for prophylaxis against respiratory syncytial virus Pancreatic enzyme Pancreatitis Pneumothorax Positive expiratory pressure Prophylactic use of oral antistaphylococcal antibiotic Psychological interventions Scheduled IV antibiotics every 3–4 months—symptom-based treatment Screening Systemic corticosteroids Vaccination program Vitamins A, E, K Vitamin D

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number of included studies, outcome measures, main results and author’s conclusions. Database Refinement and Update

If the results of a study had multiple publications only one version was retained and the same criteria were adopted for studies submitted to more conferences. When a conference abstract or an “ongoing trial” is subsequently published as an article, it is deleted from the database and replaced by the published paper. The database is regularly updated and revised to improve the quality of data. Topics Summaries

Three CF specialists (L.M., V.R., and D.S.) wrote a critical updated summary of the results from the literature, for some relevant issues (see Table 1), including a brief background, what is known and what is needed to study. RESULTS

To March 1, 2013 the database included 1,784 records as follows: 81 Cochrane reviews, of which 15 protocols, 124 other reviews (including Health Technology Assessment reports and Economic Evaluations), 1,376 primary studies (randomized and non-randomized, including congress abstracts), and 203 ongoing trials. A user-friendly web-based tool helps the user to define queries starting from one or more types of pathological conditions (concerning CF) and one or more interventions. The output of the queries is generally on three levels: how many and which studies (primary and secondary, ended or in progress) deal with the conditions submitted in the query (level 1); which are the main results of clinical trials (level 2) and, for some relevant topics, a brief critical updated summary of the results from the literature (level 3). To build a query, the user can select one or more terms from five search menus: 1. Condition/Disease/Complication (e.g.: diabetes, pregnancy, etc. CF is always implied). 2. General class of Intervention (pharmacological or nonpharmacological [e.g.: diagnosis, surgery, complementary medicine, etc.]) 3. Category of intervention (e.g.: antibacterial agents, artificial ventilation, etc.) 4. Specific Intervention (e.g.: Amikacin, Calcium, etc.) 5. Mode of Administration (how the intervention is administered).

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Within each menu, the terms are in “OR”, and the user can choose so many items as he wants; among menus the terms are in “AND.” Example: (Pseudomonas aeruginosa OR Burkholderia cepacia) AND (Tobramycin AND Inhalation/Nebulized). When the query is complete, by clicking on a “Search” button the user can read the results and find the link to the original publication. The user can also read, for all the selected studies, several details: date, criteria for inclusion in the review (or study design), participants, interventions, outcome measures, main results and authors’ conclusions. An option “see also” allows to read summaries about the main related topics. DISCUSSION

This tool may help clinicians, researchers and students to have a fast updated view of clinical research in CF by performing queries on the main topics in CF care. It could also be helpful to anyone who is going to design new studies, as it provides a concise description of what is currently known and what issues, on the contrast, need additional research. It may be of help to those who must make recommendations (guidelines), providing a first quick overview of the available evidence. We hope that the database, which was built with so much effort (includes about 1,800 citations accurately classified) and which is constantly kept up to date, will serve the largest possible number of users by providing a quick and comprehensive guide ripples that can help professionals in the correct decisions. It would be desirable to enlarge the team members with international experts to improve the quality of the contents and the methodological analysis. ACKNOWLEDGMENTS

This project was supported by an operating grant from the Italian Cystic Fibrosis Foundation. REFERENCES 1. Guyatt GH, Haynes RB, Jaeschke RZ, Cook DJ, Green L, Naylor CD, Wilson MC, Richardson WS. Users’ Guides to the Medical Literature: XXV. Evidence-based medicine: principles for applying the Users’ Guides to patient care. Evidence-Based Medicine Working Group. JAMA 2000;284:1290–1296. 2. Lu Z. PubMed and beyond: a survey of web tools for searching biomedical literature. Database 2011; baq036.

Cystic fibrosis database (CFDB): a new web-based tool for cystic fibrosis specialists.

In order to help specialists involved in CF care and clinical research to know the current best evidence about clinical effectiveness of interventions...
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